As I was selling copies of my book, Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry, at a National Alliance on Mental Illness (NAMI) conference in Albany, NY last month, I had an interesting conversation with someone which reminded me of the dangers of the antipsychiatry movement, which promotes the notion that mental illness doesn’t exist.

A man approached me at my booth and asked me about Breakdown and then shared his experience with bipolar disorder with psychotic features. He emphasized that he’s recovered.

I empathized with his experience and happened to mention “illness.”

Immediately upon hearing this, he interrupted me mid-sentence with “I do not have an illness. I don’t like the use of that word so please don’t use it. I have a condition. I’m not defined by my condition. We need to stop stigmatizing this.”

I thought, “I’m not sure how this conversation will end, but I have to educate this guy. Otherwise, he’ll continue to spread the façade that stigma is an enormous issue and the only way to mitigate it is by not accurately describing what he really has – an illness.”

So, I said to him, “According to several dictionaries, ‘condition’ means ‘illness.’”

His eyes and mouth widened with “What? That can’t be true. Are you sure?”

“I’m sure. Check it out yourself. I’m sure you’re a lot more than your bipolar disorder, but not accurately defining what you have is stigmatizing, not the other way around.”

After a few more minutes of him working through his shock about my challenging him, he eventually said “Thank you for pressing me to change for the better. I’ll look this up.” Smiles and relief.

∞∞∞

Earlier this year, I attended the National Alliance on Mental Illness’ national convention in Seattle, WA. The event was kicked off with pomp and circumstance involving a ceremonial military march beside the United States flag on stage before me. As I looked around at a sea of thousands of guests, I couldn’t help but think, “NAMI is huge, important, and powerful.”

Most of the week was filled with lectures and workshops. The “Cognitive Behavioral Therapy (CBT) for Psychosis” workshop I attended reminded me of the benefits of this therapeutic modality for a variety of mental illnesses, but also left me alarmed at some of the messages NAMI has been sending to mostly family members of those with mental illness and some professionals. CBT teaches people to think about, describe, and respond to the environment accurately. It persuades people to behave in healthy ways in response to thoughts. The underlying presumption of CBT is that when either one’s thought, emotion, or behavior changes, the other mental components change.

As I vigorously took notes in the workshop led by psychologists Kate Hardy and Sarah Kopelovich, my review was mixed. Should CBT for psychosis be completely disregarded? No. I’m grateful to the late forensic psychologist Robert Powitzky who extensively directed services for prison inmates, for his educational reminders. He wrote to me, “CBT can have several benefits other than making observable changes in positive and negative symptoms…is often effective for patients with schizophrenia who are stabilized on medication in conjunction with supportive housing.”

CBT for psychosis can be useful, especially once the psychosis has been stabilized and well-managed. The psychologists said that CBT has shown moderate effectiveness in reducing the negative symptoms of schizophrenia – social withdrawal, poverty of speech and thought, apathy, anhedonia, loss of motivation, and inattention to social or cognitive input. I credit the psychologists for pointing out, albeit briefly, that per psychologist Xavior Amador, one of the greatest predictors of successful treatment is awareness into illness. But this was as far as they got regarding insight.

On another note, I confirmed that NAMI was doing two dangerous things: marginalizing those whose psychosis interferes with the ability to engage or benefit from CBT and minimizing mental illness. A mother stood up and said to the psychologists, “All I could think of while watching this was ‘bullshit!’ Employing these techniques was impossible when my son was too agitated and unable to listen because of his psychosis.”

Below is a detailed account of exactly what these psychologists said in the “CBT for Psychosis” workshop accompanied by my impressions.

Psychosis is a temporary condition. It is usually permanent.

Everyone is susceptible to psychosis. Not quite. An extremely small percentage of the population is far more susceptible to developing psychosis than others.

Trauma and stressors make someone more susceptible to becoming psychotic than genetics. False.

There’s a correlation between creativity and psychosis. I don’t know whether this is true, but I’m not compelled to research it because it seems mostly irrelevant to treatment goals. Even if it were true, how could this possibly be used to help people with psychosis? Should psychiatrists and social workers offer painting materials instead of medication and psychosocial rehabilitation to people suffering from psychosis? Yes, this is a rhetorical question.

Psychosis is often part of PTSD and can be part of borderline personality disorder. Untrue.

It’s not helpful to tell the person with schizophrenia, “You need specialized treatment.” Psychosis is a special illness requiring specialized treatment. Treatment providers help their patients by telling them the truth.

Expect recovery. If you get good treatment, recovery is the norm. Hundreds of NAMI blogs are ridden with happy endings, but everyone with psychosis does not recover. Telling families that recovery is the norm inappropriately sets them up for huge disappointment when good treatment does not work. There are many factors that can interfere with recovery even when the best treatments are tried.

Intrusive thoughts, which everyone has, can be compared to delusions and hallucinations. Are you stating that psychosis is normal? It sure seems like it.

CBT inherently normalizes psychosis, because we all have negative thoughts, engage in unhelpful behaviors, and use unhealthy coping strategies. Thus, CBT normalizes psychotic symptoms. Psychosis is normal. The psychologists asked the audience, “How many of you ever felt others were trying to harm you?” There is nothing normal about psychosis!

With all of NAMI’s grandeur and influence, speaking out against its marginalizing those who are most ill and spreading the notion that mental illness is less than important is paramount if we want to alter the status quo. Let’s destigmatize mental illness by defining it accurately. It’s a condition, but more accurately, it’s a brain disease.

The world just lost another advocate for serious mental illness. Dr Fred Frese was a psychologist with schizophrenia and an active promoter of better care for the seriously mentally ill. He had been a board member of the National Alliance on Mental Illness and one of the founders (along with Dr E Fuller Torrey) of the Treatment Advocacy Center.

I met Fred, and his wife Penny, when they gave a talk at the Hamilton Program for Schizophrenia in the late 1990s and did a profile of them for one of the medical papers that I wrote for. Both of them were incredible speakers. Fred first got sick when he was an officer in the US Marine Corps guarding the largest repository of nuclear weapons in the US.

He became quite paranoid and was eventually transferred to Walter Reed Hospital in Washington where, he said, may of his fellow psychiatric inmates were high ranking officers. While a patient there and elsewhere, he pursued his education and obtained a PhD in psychology. He joked that he went from being an involuntary patient in one hospital in Ohio to becoming its chief psychologist years later.

He commented that he continued to study because people with mental illness simply cannot find work. His sense of humour was evident when he talked about dating his wife. They had gone for a long walk in the woods and it was then that he decided to tell her that he had paranoid schizophrenia. Not the best place to do that, he commented. She did not run off screaming, they married and had four children.

Dr Frese has always been a strong supporter of involuntary treatment when it is necessary (as it often is) and for the fair treatment of those who are ill.

He explains his position in this presentation below:

As he said in the video clip below, he refuses to be ashamed of his illness and that he is not recovered (despite all his credentials) but is in recovery.

I should also mention that Fred was very generous with his time and was an active supporter of the late Dr Carolyn Dobbins (another psychologist with schizophrenia) and was gracious enough to write a very good blurb for Katherine Flannery Dering’s book, Shot in the Head.

Those of us who advocate for improved services for the mentally ill will have to step up our efforts to make up for Fred’s loss.

Every week I think it can’t get any worse and it does. I’m talking about our southern neighbours of course. Just how low can it go? Well, it seems that there is no bottom to the ignorance and depravity of the Trump administration.

First, we have the attacks against the transgender community. If people are law abiding and civil, what they are or what they do is their business. And do normal, sensible people really care where others pee? I remember being in a hotel in the 1960’s in some small community in Guatemala. Down the hall were two doors – one marked damas and the other caballeros. They both lead into the same large room with cubicles and basins lining either side of the room. That would likely cause a stroke in South (or is it North) Carolina in 2017.

But then, to top off that bit of idiocy, we have the new communications director for the White House who has no idea how to communicate suggesting that another official is a fu@@@ paranoid schizophrenic. Words fail me at this total display of ignorance, indecency and lack of civility.

I’ve just finished reading White Trash The 400 Year Untold History of Class in America and I have to say that the author got it wrong. White trash extends into the White House.

Like most Canadians, I have friends and relatives in the US and they are intelligent decent people with whom, mostly, I share similar values. But those sensible, decent, civil people need to stand up and do whatever they can to get their country back and to help it move into the 21st Century. And lest we forget, that includes health care for your citizens. No one in civilized society anywhere can fathom how you can argue about the need to provide citizens with health.

Before you suggest that no one should throw stones, let me explain that other countries have grown. Racism and incivility exists everywhere and probably always will but most countries have gone beyond that being the norm and deal with it when it occurs. Canada’s record with Indigenous people is not very impressive but efforts are being made. The overt racism towards others and homophobia is no longer the norm. Just look at the minorities in the current Canadian cabinet or the Sikh with a full beard and turban running for the leadership of a national political party.

In Hamilton, posters promoting Fringe Festival plays about feminist and LGBQT topics were defaced with biblical anti-feminist and anti-gay graffiti. That was denounced in social media and by civic officials and festival officials have put rainbow coloured stickers over the graffiti saying “All for love. And love for all”.

I lived in England for a year during the Enoch Powell era when racism and anti-immigrant sentiment was very strong. Today, I marvel at the English cultural mosaic that is reflected in British TV mysteries and the BBC News. The vote for Brexit may have been a bit of a setback but gone are the days when BBC newsreaders and journalists had to be white and all talked with that upper class Oxbridge accent. Not anymore.

Countries evolve and also regress as liberal Germany did in the rise of Hitler. It is time for the decent Americans I know to actively work to take back their country and to evolve. I’m waiting for US organizations like NAMI, Mental Health America and others to speak up and and denounce the obscene insult to people with mental illness and hopefully, they will by the time this gets released on Monday. I am writing it on Friday.